Honoring Those Living with Rare Diseases
Families and individuals worldwide will be commemorating the Eighth Annual Rare Disease Day on Saturday, February 28th. It's a day for the rare disease community to bring attention to their struggles and needs on a daily basis. It is meant to gain the attention of decision-makers as they vote on policies and bills that ultimately affect how families navigate an often complicated world of healthcare and benefits.
Every year there are opportunities for families to go to Capitol Hill the week leading up to Rare Disease Day as well as the chance to share their stories. This year a mother, who lost her daughter to Tay-Sachs in 1971, shared her story with the Rare Disease Legislative Advocates (RDLA).
"I have learned that until someone actually lives an experience, they do not really understand its impact. I also believe everyone is definitely entitled to a personal opinion, but it is only the people who have walked the walk who can fully understand why a decision is made."
To learn more about the day, visit www.rarediseaseday.org.